Everything is OK in this neck of the woods

Oh my gosh, how is it July and I haven't done a blog post since April...! Apologies!

I must say that insulin and Azli (Cayston) seem to agree with me, I think I am the healthiest I have been in a long time! My lung function at clinic last week was 44% and my weight 56.5kg (yes i'm getting fat!) and I'm on my month off Azli!

I've dropped the insulin at lunchtime on advice of the Doctor as I was having quite a lot of hypos (low blood sugar) even with just one unit of insulin as lunchtime. I monitored my blood sugars last week and was getting some high readings after some lunchtime meals but not others so the CF team are going to decide whether they want me to start having insulin at lunch again or not.

Our second round of IVF surrogacy did not work which was heartbreaking as we really thought it would this time as things went so well leading up to it. The good news is we have six frozen embryos so are due to do a frozen embryo transfer in the upcoming weeks.

I have ordered my new mobility car as believe it or not it's nearly three years since I got my Astra, so also three years since I gave back the love of my life, the Yellow Peril Mini! The good news is I will soon be the proud driver of another Mini! That's right folks I'm getting another one, but a Mini Cooper Countryman this time. She is going to be beautiful! Dark red with a black roof and black tyres, I can't wait to go cruising in her. We are even discussing the possibility of a road trip to France next year in her! I can't decide on her name, either Rollin Roz or Ruby Roz, I guess it's a case of deciding when I see her in the flesh! 

In other good news... I was awarded ESA! The relief is amazing, to know I don't have to worry about been forced to work or go through a medical which I've heard are horrible. I had some problems receiving the new payments which I had to get Mummy to sort out as the people on the phone are horrible, but that's nothing compared to what could have happened. 

Alfie has a new friend called Jasper, he is about 16 weeks old and half Jack Russell and half Chihuahua. he is my brothers puppy and we had to get the dog trainer out to show us how to introduce Jasper to Alfie as Alfie does not like dogs apart from his buddy Murphy. They are getting on OKish now but it's taken a lot of time and energy. Jasper is a mental dog, he never stops moving, he never seems to sleep, he digs, chews and eats everything and he likes to wind Alfie up by runnning around him and sometimes even biting his tail. Alfie being a more mature dog these days (he is now 6!) is not impressed as he just wants to lie back and relax whereas Jasper wants to play. Therefore these differences cause Alfie to tell Jasper off quite often and also me tell Jasper off quite often as he always seems to be running off with something of mine like a shoe or a charger, if you leave anything on the floor he will have it and he is fast! The joys of puppies! Here is a photo of the troublesome trio, from the left: Murphy, Alfie, Jasper - good boys sitting for treats!

Here are a few pictures from the past few weeks

First night out in months as actually felt well enough!

Trip to Bridlington (weather was horrible!)

Trip to the Lakes after failed surrogacy attempt to cheer ourselves up! (weather was beautiful!)

 One problem with Azli... you have to do it three times a day so end up doing it in very random locations!

We were followed by a herd of young cows, it was quite scary! Like the Cravendale advert!

I must admit, things are hard for me at the moment with our second surrogacy attempt failing. I might be doing well CF wise but psychologically I'm struggling, however I'll save that for my surrogacy blog! I do know something though, that after everything we have gone through this year I know I love Pete with all my heart and know we can get through anything together! I am so grateful everyday I have such an amazing person in my life! Hope everyone is well, I will try update again before three months has passed!

Glowing Report!

I'm really happy to say that yesterday my lung function was 49%, my weight 55.8kg and my oxygen saturation (sats) levels were 99%! I can't remember the last time I saw figures like that, for months and months now my sats have sat at 93-95% and that was just normal for me, sometimes getting even lower when I felt unwell. So to see them at a normal number is great and for my lung function to be almost hitting 50% is amazing. My weight is back to pre pneumonia 2011 weight, it just shows how long it can take to put that weight back on once you lose it. I have started a 10 day course of IVs which sounds stupid given the numbers, but I have felt a bit iffy the past week or so with my energy levels and I started to develop a tickly cough and chest pains so decided I wanted to have some before we start fertility treatment again, rather than possibly end up needing them half way through.

So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.

Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!

So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!

I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!

Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!

Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.

The Dreaded Diabetes

I officially have CF related diabetes, lucky me! I was admitted in to hospital last Wednesday to start insulin treatment and stayed in just the one night which was long enough, I swear its enough to make you go crazy. I don't want to be nasty about my CF team as they are brilliant but staying in hospital is hard work as your routine is totally ruined and you are constantly waiting for people to come see you and do not have any idea when they may come in which makes it difficult to do your treatment or get a shower or get breakfast etc. I woke up at about 7.30am and nobody came to see me until at least 10am, I had no idea if I should get my own breakfast or if I was going to be offered a fry up (they do provide fry ups), if I needed my blood sugars checking, if a physio was going to come and see me since I wasn't in because of my chest etc, its just difficult for someone like me who likes routine and to plan the day ahead. Then when someone came to see me she asked me if I wanted breakfast, (erm no its 10.15am I went and got myself some ages ago...) I got in trouble for not having my blood sugar tested beforehand which nobody had told me I needed to do!

So I'm home now and doing OK with the insulin. The needle is 5mm so small compared to the fertility injections I've done in the past and I'm alternating between injecting in my thigh and my stomach. At the moment I'm having insulin with my lunch and tea. I started at two units for both which is a small dose but I've now upped it to three or four units with my tea. I'm having to take my blood sugars before every meal and an hour and a half afterwards plus any time I think I'm having a hypo (where your blood sugar goes too low) which is quite often. For example on Tuesday I had three hypos! I have to learn to recognise hypos as you are not allowed to drive when having one and they can be dangerous if not treated. It's quite easily really since I can't see, concentrate or think properly when having one and I feel shaky and dizzy, so I wouldn't want to drive when having one anyway! I've had to contact the DVLA to let them know I have diabetes and have filled in a form for them regarding my treatment etc.

I remember not understanding why people with diabetes have hypos as isn't diabetes when your blood sugar goes too high (which is called a hyper)?! Well diabetics get both, the aim is to try have blood sugars between 4-7. Hypos can be caused by the insulin injected and then also my body creates insulin at stupid times when it shouldn't, like 2 hours after I've eaten. Also exercise (which can be just walking or rushing around) can cause hypos and not eating for long periods of time. I seem to always get them when I have breakfast really early, for example I had breakfast at 6am yesterday and by 8.45am I was having a hypo, it's totally stupid and so annoying especially when I'd had porridge which is supposed to release carbs slowly!

I'm not enjoying have to do blood sugars and insulin when eating out, I seem to have so much stuff to pack when ever I go anywhere. My bag is just full of tablets and snacks (to treat hypos) and needles etc. Then if I have a dress on I have to go to the toilet to do the insulin as I don't really want to be pulling my dress up in front of everyone!

I'm also doing Azli (Cayston) nebulisers in replacement of Tobi, which is three times a day and I've started doing my hypertonic saline three times a day when I can, as my chest is always really full of mucus by the afternoon. So I have to plan for that as obviously they have to be spaced apart and I'm starting to get really frustrated with how much I have to plan and prepare to do anything at all! My whole day seems to be CF related and I'm really feeling fed up.

So in a day I am doing nine nebulisers, two lots of physio, insulin and at least six blood sugar readings, all my daily tablets plus tablets whenever I eat, having to treat regular hypos and trying to go to the gym at least three times a week. Thankfully my weight is great at the moment (55.5kg) so I'm off supplements for now!

I am also having to apply for ESA (employment and support allowance) which is the replacement for Incapacity benefit which is the benefit you received if you are unable to work due to a medical condition/disability. So instead of just moving me over they are making me apply for ESA and I am terrified I'm going to lose this benefit as I've heard the assessments are unfair and they just assume you can do something on a regular basis if you don't mention it or do it once. Examples of some are the questions are 'can you lift your arms above your head', 'can you pick up a penny', 'can you cut up your food', 'can you learn new tasks' there doesn't seem to be anything about having low levels of energy or having a heavy treatment regime to fit in your day however there is a section on walking which seems more appropriate for my condition. Anyway I've done my best to tailor the answers to the questions to cover my illness and will have to hope its enough.

I asked the doctor I saw two weeks ago to write me a letter of support and she referred it to the social worker who I never see so not sure why she did that, so she wrote me a letter which if I'm honest was pretty poor, I think it was just a standard letter, after all she doesn't know me. She put I did my treatment 'most days' and I go to the hospital to be reviewed every 6-8 weeks which is totally untrue, at the moment it's once a week! So I have asked a different doctor who knows me better to write me a letter which I haven't seen yet but I'm hoping it's more helpful. I need to post the form today as they only give you three weeks to get it all filled in and get your support letter and it needs to be there on Monday, so Pete is having to drive to the hospital to pick up the doctors letter. So I've been rather stressed by it all!

Moving in Different Directions

I've been feeling abit fed up this week, I don't know if it's because of the weather, because I haven't had much to do, hormones etc, but I do know I have been feeling fed up! I just seem to be sat around alot, thinking of things to do or waiting for Pete to come home. This isn't a plea for people I know to ask me to do stuff for them or go places with them....

I guess I have been feeling abit stressed about all these cuts the government are making and if I was going to lose any of my benefits. I had it in my head we were going to be either skint or I was going to have to work loads and it would ruin my life as I'd get really ill. Anyway from what I can gather it's only people in the work related group who will be affected, they will lose the benefit after a year because they are supposed to be finding a job, apparently their disability doesn't prevent them working, it just prevents them finding a suitable job. What a load of sh!te, I know people with CF in that group. They can find a job, it's the fact their body is ill that stops them working and CF doesn't get better after a year does it?! But it's OK because the guy on This Morning says 'if you are sat watching TV now and have a genuine disability you have nothing to worry about', yeah right. So yes I have been stressing about that and still am because god knows what the government are going to do next, but we must remember 'we are in this together' (sick of hearing that).

The surrogacy stuff is making me fed up too, because now we are members I am worried that no surrogates are going to like us and we are never going to be matched with someone. I'm scared me having CF will put them off, I'm scared there seems to be so many other couples on there and there just isn't enough surrogates and I'm scared it is going to take years or never happen atall.

Then I'm also fed up because my friends seem to be doing things I can't do with them because of either lack of money or because of my health. For example they are all going to a bonfire night but I declined to go because it's cold and there will be alot of walking involved, plus I think the fire smoke will make me cough (along with the cold). I could attempt to go but I know I won't enjoy it because of the all the mentioned things, fireworks don't even interest me to to be honest, so it would be a waste of an effort. However I don't like feeling left out!

Then also my two best friends are going on a weekend away (with some other girls) to London in December which I didn't even get invited to because they knew I wouldn't be able to go! I can't afford it (yes I know I own a nice house and they don't) and even if I could I really can't see me walking around London on a night out in December. When Pete and I went it exhausted me and that's when I was relatively warm, not wearing heels (don't even suggest going out in flats!), and Pete lets me walk at my own pace, my friends do not!

Now you may think my reasons regarding walking, coughing etc are petty and I should just put up with it to have some fun, but it's easier said than done. When you cough so hard that you wee (sorry...this blog is truthful!), or everyone is looking at you, or you feel like you are going to be sick and wishing everyone wasn't looking at you in case you are, it is a big thing.

Sometimes I feel like my life is moving a different direction to my friends, I'm married, a home owner, hopefully will have a child in the next few years and have an illness. Whereas they have growing careers so more money, no homes to pay for, no husbands and loads of energy. I'm scared of us drifting apart, and if I don't have my friends then I will be extremely lonely.

Anyway it's not all doom and gloom, don't get me wrong, I love having my own home and being married. I just don't like feeling left out! I'm sure it happens to people all the time, with or without CF, but I do have normal problems too. CF just seems to make them worse! I am hopefully going out tomorrow night into town, so I can still do things with my friends, just not the really exciting stuff! Also there is our Halloween party next Saturday which I am very excited about!

Holiday Coundown Begins!

Went to the hospital today to finish my IVs even though I technically finished them on Saturday. My fev1 is up to 42% and fvc is down slightly at 59%, but fev1 is the most important and its gone up and is back in the 40% range so I am happy!
My weight was 53.5kg, I don't get it! How can I put on and lose 3kg in 3-4 weeks? Its crazy, I think I am going to stop paying attention to my weight, its like its on a yoyo! I haven't had any supplements for weeks, I just couldn't be bothered making them when on my IVs, maybe I'll start them again after my holiday, I mean who wants to put weight on before a holiday?!

The best news of all is that I don't need oxygen for my flight! Apparently my blood gases fell to 7.3 and 7.4 is the bracket they use, so I am still borderline and therefore only need oxygen on long haul flights. I rang BMI Baby yesterday to find out what I'd need to do if I did need oxygen, I was told it was £100 per flight (so that would be £200 as I have a flight there and flight back) plus £30 for medical clearance! I really do not know how they get away with it, I was so angry I cried afterwards because if I needed oxygen there was nothing I could do about it and they know it! It's taking advantage and I think it's disgraceful. It does not cost £100 to supply some oxygen for a 2 hour flight. Whats medical clearance? I'll tell you what it is, it's them sending my doctor a fax for the doctor to fill some details in. From now on whenever I book a holiday I shall make sure the airline provides free oxygen or the charge is reasonable. I don't know when I am going to stop being borderline and need oxygen on short haul flights and I won't let companies take advantage of my illness! Anyway now this is over I can just look forward to my holiday, without any worries!

This morning a lady came around from the council to check our second room is been used a treatment room. This means I can get a discount in our council tax, all my IV stuff is still in there plus my physio table, so she had a quick look and said that was fine.

I fear I may be seeing more assessors regarding benefits etc after the Budget yesterday. Everyone on DLA (new and current) is going to have a medical screening by 2013 apparently. This has worried me as I rely heavily on my DLA, it forms part of my income to help pay the bills, mortgage etc. I know I am not a fraud and people keep saying 'well if you are genuine you will be OK' but people can be very naive. Disability is whatever the government say it is, meeting with someone for an hour or so doesn't really give a fair few of all the problems someone with an unseen disability like me has to face. If I lost my DLA or it was reduced, I would possibly have to go back to work so we could stay in our house. This would have a negative impact on my health and help it to deteriorate quicker, I've tried working, I'd love to be able to work and I still do work a few hours a week (which tires me out!), but I know from experience that even working part-time affects my compliance, energy and overall health. So yes I am a tad worried about these so called assessments! But I also agree that there are loads of people on benefits who are not disabled or ill and they need to be made to go back to work. So it's a catch 22 really! However I'll worry about it when the times comes and have faith in the system...!

Arghhh Matey!

It feels so good to be getting back to living and enjoying myself, when you are on IVs and they are making you feel so emotional and rubbish, its difficult to see any light at the end of the tunnel. Yes I know in a few months it will all happen again, I'm not like other non-CF people, it's not a one off, it's something that happens regularly. However the months in between make it worthwhile, the few weeks after when I know I'm free and I don't have to go back to outpatients for awhile. I can just be me and enjoy life!

I often say people with CF appreciate life more and people ask me what I mean by that, how do they appreciate it more? Well because we have to work so bloody hard for it! On Saturday I had to do my last dose of IVs, then work at my mums shop for a few hours, then go get my needle taken out, then get home and get a proper shower for the first time in 2 weeks. So yes that shower was amazing and I am sure I appreciated that shower alot more then anyone else appreciates a shower! Then I had to get ready and do my physio and nebuliser before going out. So yes I think I do think I appreciated that night out more than others, I haven't been out for three weeks, I've felt like crap and it felt so good to be partying!

I went to my cousins house party and it was a pirates and princesses party so naturally I dressed as a pirate! It was another friends birthday and she was in town so after midnight I rounded some people up and went into town to see her but I only saw her for a few minutes. After a few hours my friends wanted to go home so I went back to my cousins party. I mean can you believe that? I probably still had strong antibiotics in my system and drank rather alot, but I wasn't ready to call it a night yet! So yes I think I do make the most of things when I have the energy to do so! I'd just like to point out the idiot bouncer who thought it was extremely funny inspecting my firearm (I had a fake pirate gun), they really need to get out more!

Tell you what, I had a banging hangover on Sunday but it was nothing compared to how I felt on that first week of IVs! Ah the joys of a simple hangover...!

I had my flight test today. I explained what happens in a flight test in this blog entry so won't bother going through it again. My sats fell to 88%! This is not good, I was borderline at 90% last year so I have no idea what this means. I am guessing it means I might need oxygen even on a short haul flight that is less that 2 hours long. I am going to call the hospital tomorrow so that if I do need oxygen I have the documents to take with me on Wednesday to get the doctor to sign to get it sorted asap. I am not impressed, is this a sign my health is worsening?

I have received a letter through the post saying I need to start looking for a new car as my motability car will be getting replaced in September. No I do not get a FREE car as people always like to point out I do, 'oh it must be nice to get a free new car every three years', yeah well it must be nice to have a healthy body arsehole! I get money taken out of my benefits for the car, so it is not free atall, I think I lose about £50 a week in benefits to have the car, so no it's not free atall, it's not like my benefits make me a millionaire as it is. Plus alot of the cars, you have to pay an advancement fee, when you collect it. So yes I do feel lucky I live in a country where I can receive help with transport, but no it's not free and I'd much rather not have CF!!

I'll be quite sad to see my mini go, I can't afford another soft top car and I need something bigger really. I'll miss driving down the motorway with the roof down and my favourite tunes blasting out. There really is something great about going fast and wind isn't there? I imagine running might feel abit like that if you were a good runner, kind of like you are free and invincible, or riding fast on a horse! On the way back from the hospital today I went past my junction and carried on to the next then turned and came back just to stay on there abit longer because it's so good!

Murder by Yoga

I'm quite fed up at the moment, I don't seem to have much to do!
I love the snow but it means I can't take Alfie out, even if I do its a 15 minute job just around town so not very scenic or peaceful. I might actually try go somewhere today because it's abit warmer, about 1-2 degrees now whereas the past week or so its been freezing or below. No matter how many layers I put on I still seem to feel cold! Alfie also gets cold even with his coat on, he needs some boots or something!! So we have mainly been hibernating and watching my Tudors dvds that I got for Christmas.

The purchase of the property is moving on now, the mortgage guy has told us we have the mortgage subject to the valuation etc so that's good. Apparently they need to manually check it because of my benefits but he doesn't think this will cause a problem, lets hope so!! I have been eying things up in shops I want like curtains and rugs, just need to save some money up! Which leads onto he fact I am trying not to spend any money so I can save up, hence why I am also bored!

I had to fill in a tax returns form because I work at my mums barber shop each week (I am classed as self employed). I could swear the advert says tax doesn't have to taxing. Well since I couldn't log into the damn thing, that made it more difficult! I phoned them up and ended up getting very annoyed with the 'helpline' man as he was not very helpful atall and keep asking me why stuff wouldn't be working, why would I know?! That's why I am ringing him! After having a go at him he actually started to be abit more helpful and we established I had locked my self out, but rather than telling me this it was telling me I didn't exist! Stupid thing.

I eventually got in and filled it in, I also have to put in my incapacity benefit as it can be taxed (but the first 28 weeks don't get taxed), I don't think from reading the booklet that disability living allowance is taxable. Anyway, if I have filled it in right which I highly doubt I have done, then they owe me some money. Bonus!

I swear the woman at Yoga is trying to kill me. I've started going on a Monday instead and I think the other people may be more advanced because it seems to be more fast paced and it makes me get so out of breath! She gets us to breathe in and out really slowly over a few seconds whilst doing the yoga positions, seriously she is trying to kill me! I also ache the day after, I do not think I am very flexible! It's all good for me but hard work. She taught us last week a way to breathe to try get air into all parts of our lungs, she said it helps increase lung capacity. Bing! My ears pricked up! Basically the three parts of your lungs each need to be focused on, so you breath into your lower lungs first for 1 second, then your middle for 1 second then upper for 1 second. She taught us how to feel our chest so we know we are getting the right parts. Then when you breathe out you do the same, breathe out of lower first for one second, then middle then upper. Then you increase the seconds if you can. In the class she had us going up to 3 seconds per section of the lung, I sometimes managed 2 seconds per section of the lung (so 6 seconds breathing in) if I was lucky!
I decided to try this when doing my acapella, it doesn't work when doing it breathing out however it does work when breathing in, it seems to make sure it gets air to all of your lungs before you blow out. I seem to be shifting more mucus anyway!

I am actually very mad at the gym I go to. When I went on Monday to the yoga all the disabled spaces were taken. There are maybe 30 or more disabled spaces so you would think I would get one! But no they were all full so I had to park by the entrance (the drop off point) as I refused to park at the back of the carpark. I complained to the lady at reception and queried if anyone checked as most of the cars I saw had no disabled sticker. She said 'well it's because of the snow and ice, people want to park closer', can you believe that?! She was actually saying it was OK to do! I told her that I was actually disabled and couldn't find a space and when it snows, people who are disabled need the spaces even more and don't just disappear for others convenience! She said she would have a word with the manager but I doubt she did so I'm going to make a proper complaint as I don't think it's acceptable. They should be clearing the carpark so this doesn't happen and also put signs up reminding people that snow doesn't make them disabled! Or/And get someone to give out the fines they 'claim' to give out if you park in a disabled space without a sticker.

Leaking needle?

My port-dressing situation is going better than last time but still not great. I changed the dressing on Tuesday as it looked like there was water trapped underneath, it was very hard to peel the dressing off the needle without pulling it off and I was ekking alot! So I put a fresh dressing on and then on Wednesday I could see yellow water around the needle moving about, so I went through the whole routine again and changed the dressing, giving the area a good clean and getting rid of a few crusty bits. Today it was even worse! There was loads of yellow liquid and my arm around the needle looked all wet so I took the dressing off again and all this yellow stuff dribbled down my arm! I gave it another clean and let it dry fully with some gauze on to absorb any liquid, I then flushed my line with no dressing on to see it the needle was leaking and couldn't see anything. I then discovered I had no dermafilm dressing left so I put some tagaderm on which didn't even stick to my arm properly at the top and was coming off by the time I had, had a bath! So I put some cosmopore E on, this means I can't see what is going on and I think its the best way! I constantly want to mess with it and worry about it. It doesn't feel wet anymore but I haven't had another dose of drugs yet so if it the needle leaking I will find out in about an hour! I imagine it has dried and will revel a nice crusty layer when the nurse comes to change the needle tomorrow. I'm getting pissed off with it, like I said its not as bad as before but its still not nice, its not itching though and I definitely don't think its the dressing as it definitely seems to be based around the needle area. Hopefully it will just be the needle leaking and when I get it changed tomorrow it will be OK

I'm finally starting to get my incapacity benefit, wahoo! I get my mum to call them now as I called them last week to see how it was going and the guy was horrible and said I wasn't going to get anything! So I started crying thinking I was going to have to go back to work and all sorts, did he not realise how much of an impact his response could have on someone?! So my mum called and they said to her it was been processed, why couldn't they be nice to me?! I got a letter saying I qualified and I will get backpayments from February. My mum also asked about permitted work as I would like to work a few hours a week just to do something and they said as long as I don't earn over £20 a week it's OK. They are sending me some information and a form to fill in.

Today I went for a walk with my mum, Nana, Nana's husband and the pooches. I then went to the gym and did 11 minutes on the bike and 16 minutes on the treadmill, the most I have done, yippee!! Here is me wearing my super cool new tshirt for at the gym

I'm a numpty

Well I am sorry about that post yesterday! I guess I treat this blog as a diary so just write what I'm feeling etc. when I want to and sometimes it's not very good reading for you guys so sorry about that, but it does help me to express myself and get it out of my system, better I moan on here than go around in public with a face on. You could say my blog is my online therapist :o) It also helps because I read it over later in the afternoon and thought 'Gemma you are a numpty for feeling so sorry for yourself!'. I did however have my mum on the phone worried about me! I do not do this to seek attention I swear and I don't use it as a cry out for help, this blog is kind of a story if you like of my life and yesterday I was feeling abit shitty.....!

Today however I am feeling better, not better like my cf symptoms have disappeared and I am cured (I wish!), more than I am feeling positive and have told myself to cheer up because things could be worse!
Yesterday I did some cleaning in the end, I vacuumed, did some washing and cleaned the kitchen. I then just watched TV, firstly I watched my DVD I got for Christmas 'The Other Boleyn Girl' and then some of 'the Tudors', so I had a Tudors afternoon and I quite enjoyed it. The Tudors is sooo much better than The Other Boleyn Girl, the costumes, the settings, the details but obviously a film has to skim over alot of details, I have read the book the film is based on and that is bloody brilliant and goes into so much detail.

Today I went for my hair doing, I went in about 10am as my mum said I could go in abit later. I took the guy who does my hair a big piece if chocolate cake because he always does my hair for nothing without a grumble (well maybe one or two) so I thought I'd give him some of my cake! I also called my gp to arrange another sick note which he is going to give me for 8 weeks so that's it now I don't need anymore to claim my incapacity benefit. I also asked him about my medical exemption certificate and he said if I went to the chemist they could get it signed by a doctor for me?! So I'll let you know if this happens or if my GP is crazy.

I then went to the hairdressing wholesalers to get some more mousse for my hair, it's so much better than the crap you can buy from the shops and the cans are massive and last me about 6 months and they are only about £4! I also got some purple nail varnish for Saturday, because I will be wearing my purple shoes and a purple necklace, so I'm going to be all purple and black because my dress is black. I'm now at home watching some more Tudors, I'm addicted again! I also started my tobi nebs again on Tuesday because I've finished my months gap (I do them for one month then have a month off), hopefully these will make me feel abit better before I start my iv's. I wasn't going to bother since I don't do them when on my iv's which I'm starting next week, but thought it might help improves things.

Am I a Fraud...?

I went to the hospital today because like a good girl I phoned them yesterday as my chest pains were still there. So they asked me to come in for an xray just to check everything was ok.

I was half an hour late but I figured since I had to wait in a car for an hour last week that they could deal with it, it's abit of a give and take isn't it? Here is a picture of me in my sexy gown for my x-ray, also a picture of one of my x-rays for anyone who is not familiar with them.

I saw a Doctor i've never met before but she seemed nice. I told her I felt abit of a fraud as I felt fine and the pains were not really bad or anything but i was just following orders from my clinic. My lung function was the same as last week and the doctor couldn't hear anything on my chest unusual. She said my x-ray looked fine and said if they get any worse they will look into it further. Abit of a wasted journey I hear you say..... well no because whilst I was there I got my acapella at last! Here's a picture of the beast

This is supposed to be better than my pep mask, it vibrates your chest as you blow out but still creates the resistance like the pep mask. The physio says I can do it whilst still patting but to practice using it just sat down first as I have to get the technique right. It feels abit funny to use and i've had a quick go with it and not sure if it's going to be enough by it's self but we shall see. I do like a good bashing, I think it's the best way to get the mucus lose, but if I can do this with the patting I think that will be the best way, that's what I do with the pep mask at the moment.

I went to the gym last night at quarter to 8 as that was the only time the trainer could see me. The guy I saw before has now handed all his clients (is that what we are called...?) to this newly qualified lady. She now deals with all the people with health problems etc. I was abit concerned that she wouldn't have a clue but she was very nice and chatted to me whilst I was doing my exercises. Im keeping the same programme but just trying to go on the treadmill for abit longer and she has got me doing these squat things to strengthen my thighs as well. She was really happy about my lung function going up and says we can get it to 60% because I told her that was my target.

This might sound abit silly, but i'm getting abit concerned I might improve too much or is that just wishful thinking :o) ? Hear me out..... i've given up work to concentrate on my health and because I was struggling when I was working and ill all the time, now i'm not working i'm feeling loads better because I can do my physio more, exercise more, rest more etc. However i'm trying to claim incapacity benefit but I can't claim it until february next year. What happens if they won't give me it because i'm alot better by then? I know that if I went back to working that this will all go to waste because I can't keep this up and work, even part-time. Once i've been to the gym thats it for the day, i'm well tired. I'm getting loads of sleep, if I worked I would have to get up at the crack of dawn to do my physio, nebs etc. Work would tire me out and then on my days off I'd have to do the household chores etc. It not like I can get better and then return to work, this is a regime that I need to upkeep for the rest of my life really, my cf isn't going to go away! I don't want people thinking i'm a fraud though! I feel like keeping healthy is as much hard work as having a job sometimes and more painful!

feeling useless

Well yesterday I did naff all, I sat around feeling sorry for myself and did quite alot of sleeping. I didnt sleep too well as I had a horrible headache and I even when I sleep, its almost like i'm not sleeping properly, I dont feel like i've slept. I feel like i'm not fully here most of the time and I can't concentrate on things and organise myself, time just went yesterday and I don't even know what I did

In the evening Petes parents took us out for a meal which was nice and I had some wine which woke me up abit.... Pete asked if was drunk on the way home (which I was not) because I was 'chatty' and this made me miserable again. I always interpret things he says to mean something else, see I interpreted this as meaning i'm not usually chatty because i'm boring because I sit around doing nothing. Earlier he said to me about something (cant remember what!) that 'it would give me something to do' and I had a go at him saying just because I dont work I don't need him finding things for me to do.

Anyway last night I ended up crying when we got home and just had a moan about my cf, I mean thats allowed once in a while isn't it? I explained I felt useless, that I was an intelligent person and had the potential to do great things with my career (seriously I think I could have been a great lawyer!) but because of my stupid cf I couldn't, I couldn't even handle doing a job that wasn't that demanding. I just moaned about everything, down to the fact all my bras are now too tight for me because my chest has gotten so much wider from I dunno, coughing and stuff, and they all now dig into me. I feel useless because we are skint because I have no wage now and don't even qualify for benefits for 6 months. When we were having tea Petes parents asked me what was happening job wise, I explained I had felt better since giving up work and didn't plan to go back. They said 'well we would all feel better if we didn't work', in a jokey way and i'm sure they were just joking around and didn't mean anything by it but I dont feel like people understand how I feel about giving up work, about giving up having a possible career. It is not something I want to do but I know its for the best. I just feel like I have no purpose at the moment, i've always had a goal to work towards and now I feel like there is just... nothing. Im so ungrateful because there are people with cf worse off than me but I cant help how negative i'm feeling at the moment. I feel like i'm getting left behind, my friends are all doing great stuff, Pete has a great job and i'm just doing nothing......!

So anyway today I bought a load of new bras, I got 36's. So I wont have that problem anymore, I also walked the dogs around town as I needed to pay a cheque in and post a letter. I also went food shopping which I find extremely hard work as we live on the bottom floor and you have to walk down stairs to get to our flat so back up them to get the next lot of bags and its hard work....! Ive got a new book to read called the constant princess, its about Catherine of Aragon (yes my Tudors obsession continues), its by the woman who wrote the other Boleyn girl and that was a really good book. I got this book off ebay for £1.20, bargain! So going to read that now, then kill myself later ... No i'm just kidding :o)

Decisions to make

Well I felt bad for my car so I took him to the hand car wash where some very nice gentlemen washed my car for me whilst I sat inside nice and comfy with Alfie who was petrified the whole time. My car is now lovely and clean, well it was until it rained this afternoon, its probably dirty again now.

Yesterday I found out I cannot claim incapacity benefit as I have not contributed enough NI, which is abit of a bummer. Ive been practically working part time or full time since I was 15 years old, even when I was doing my degree (apart from one year I took out) so don't see how its possible I have not contributed enough, but there you go. Anyway she has said I can apply for youth incapacity benefit but have to wait 6 months! Erm so I have to live on thin air until then.... I've applied for income support anyway but not sure if i'll get anything as Pete works full-time, he's an assistant town planner incase you were wondering what he does.

I got a call from the university today saying they have found me a work placement in Rotherham which is about 40 minutes away from where I live so quite far considering petrol and time it will take travelling. I still don't know if I want to go back to university, I dont know if it will make my health deteriorate with all the travelling, work load etc and if I can afford it. I'm not sure if I even want to be a teacher or could manage being one, I would like to do the course to give me something to focus on and see if I would like to be a teacher but its a waste of money if I don't become a teacher and if it makes my health worsen! Stupid cf getting in the way as usual, i'm just stuck with what to do. Plus now i'm worried if I do go to uni and my health worsens so that I definitely can't work I won't be able to get any incapacity benefit as I only qualify for this youth benefit because i'm under 25! Cf is a pain, you just don't know if you can manage things until you do them and you can feel great one day and rubbish another day. Im at a stage where I can still do some things but if I push myself too much my health will get worse like it did when I was working full-time. I feel so much better not working but feel abit useless and like I should be doing something but then I don't want to jeopardise my health. Its very tricky, very tricky indeed and also hard explaining this to people. I get sick of people asking me what i'm going to do with my degree and I know people think it was a waste of 4 years if I don't do anything with it even if they don't say it, but I didn't know what my health would be like in 4 years when I started university plus my health was great back then! Also I enjoyed univeristy and I love studying so would have still gone. I also know people think i'm lazy or whatever when I say i'm not working because of my health, because to look at me I appear fine, maybe I should walk with a limp from now on so people believe me...

ps- I did not mean to offend anyone who has a limp xx

models with disabilities

Well we didn't end up going for a drink last night as my friend has a cold and didn't feel too good, so we decided to cancel since i'd seen my other friend already that day.

So instead I watched that programme about ladies with disabilities trying to become models. It's quite good but i've decided I don't really like the girl that uses a wheelchair, shes very bitchy, she was bitching about another girl who is deaf when she was in the car with her! She seems to think her disability is worse than everyone elses, she compared hiring a model that was deaf with hiring a model that spoke french! Erm no I don't think so! I don't know what it's like being deaf but it must be horrible, you have to lip read which must be exhausting if theres a group of people, people cannot understand you until they get to know you, you can't go to the cinema (unless you go to a subtitled showing and there are only a few ), you can't listen to music and many more things! This woman in the wheelchair says you can't even see most of the girls disabilities in the photos and it should be someone with a seen disability, well if you take her out of the wheelchair and plonk her in a chair you can't see hers either! I think she is very narrow minded, yes its horrible having to use a wheelchair but their disabilities are just as bad so she shouldn't be going around on her high horse bitching about them all.

I get this all the time when I park in disabled spaces, funny looks because i'm not old or don't have one leg longer than the other therefore I cannot be disabled. There are loads of disabilities that cannot be seen and i'm not going to go around looking in pain or tired all the time so I 'look' disabled, I just get on with it (well ok, sometimes I have a good moan). People are so judgemental about things they don't have a clue about, and then others think it's their right to just park in disabled space because no other spaces are available or their car is so big they cannot get it into a normal space.

Anyway....back to the programme, it's very entertaining!! I think it's good to raise awareness and show disabled people are normal and for example can be bitches too!! I don't know if they will be able to make it as models, some of them are gorgeous but the model industry is horrible to everyone anyway and I imagine will not make reasonable adjustments for them so just not hire them, I know this is against the DDA but they could just claim they 'weren't right for the shoot'. Isn't modelling about perfection anyway? Aren't they supposed to be these people we envy because they are perfect and thats how they sell the products? So perhaps a person with an unseen disability would be better, they can still portray this to the camera but have a disability to be a role model.





I could not get to sleep last night, my chest felt tight and I was coughing loads, but a dry cough not a productive one which makes me think its the tobi that I started yesterday thats causing it. Same this morning and most of today especially when outside (its the cold that does it)

Organised getting incapacity benefit today, my mum had to call as she is registered as my carer. I'm not happy i'm having to claim these benefits but if it means I have time to try get better than thats a good thing. I hope I qualify!

Went shopping to Asda, i was pi**ing it down, no disabled spaces left so had to park further away. Coughing my guts up because I ran inside and got drenched when loading the shopping into my car since a bag broke and jars went everywhere including on my toe. I actually took some bags with me today to try be environmentally friendly, so trust the only carrier bag I had to use to rip on me! Unloading the shopping was horrible, walking up and down the stairs makes me so breathless and warm! Then unpacking it, there was loads of rotten veg in the fridge so I had to empty it and then empty the bin (have to walk up the stairs again), I felt like it was never ending!! Finally I finished and had a chocolate donut to make up for it :o)

Our house insurance is due for renewal so I've spent ages looking for quotes, goodness its so confusing! I've been using those comparison sites but how am I supposed to know what locks my doors have? just normal ones! I looked them up anyway and think I have an idea now! Some guy just called me but I was having my tea so he is calling back later, I prefer to look at things on the Internet though so I can take it at my own pace, they always rush you on the phone and catch you out!

Pete is at the rugby tonight so i'm going to watch a film called dirty pretty things that i've borrowed off my mum, I bought some popcorn to have with it. How exciting!!

Finished IV's!! yeay!!

Well today I finished my iv's!

I found the hospital fine (our ward has recently moved to St James hospital rather than Seacroft) as this was my first time driving there by myself, and I also got parked right outside the entrance in one of the disabled spots, bonus! (I have a disabled badge before you start judging me!)
My lung function is up abit fev1 is 42% which is apparently normal for me, can't remember what my fvc was. To get your lung function you blow into a machine for as long as you can, it always makes me get headache and warm because it's hard work! I saw a new registrar doctor so she didn't really know much or say anything of use, I asked her about my results for my gluclose tolerance test I had last time, and she didnt understand the results and had to get a nurse to explain to her! Anyway they were normal which is good, means I don't have diabetes! The poor nurse was run off her her feet as she was the only one in today. My port bled back beautifully for my blood tests, thats good news!! Im not sure what they take the blood for, to test my immune system and things I think! The physio also takes a sputum sample everytime I go, so they can see what bugs I have growing in my lungs. Nice!
They want to see me in 4 weeks to see how i'm doing, I told them i still wasn't back to my normal self but this might be because of a) the iv's - the antibiotics make me tired anyway so once I stop them i might feel better b) i've been sat around for 3 weeks so need to build my stamina up again.
They didnt have my letter ready as promised confirming I have cf, to send off with my disabled student allowance application (for when I go to university in september). So they are going to send me it in the post.....lets hope! I also saw the social worker about benefits since I am from now on only going to work part-time due to my health, she gave me some information but it looks very confusing, so going to ring the job centre to get advice.
Now my needle is out I can have a good look at my new port, it looks good, doesn't stick out too much, still abit bruised. Heres a picture, you can see the port abit as there is abit of a lump and a red dot where the needle was



So anyway to Petes birthday! I got him a camcorder! He seems to like it but its abit hard to be enthusiastic at 7 in the morning when your in a rush to go to work! I made him a cake yesterday from scratch, it was hard work! heres a picture, the knives were to stop the top sliding off until the icing dried, I hope it tastes good!!



Yesterday I also cleaned the bathroom and made some pancakes for my lunch with the left over eggs from making the cake. So was quite a productive day overall! Petes mum, dad, two sisters and nephew are coming over tonight to go out for a meal, should be good. Think I might take Alfie for a walk this afternoon, he looks abit fed up bless him!